In January of 2016, a devastating loss struck my life when my mother passed away. She had been battling stage 4 cancer for the past seven months, although in hindsight, there were signs of her declining health even earlier. At the time, I resided in Northern California while my mom lived in our home state of New Mexico. I hadn’t seen her in over a year, and it pains me to admit that I failed to recognize the severity of her condition. Distance played a part in my obliviousness.
The moment my mother called to share her diagnosis, she mentioned her upcoming chemotherapy treatments and the advanced stage of her cancer. As she lived alone, I couldn’t bear the thought of her enduring this battle on her own, while I remained comfortably in sunny California. I made a firm decision to be by her side.
My husband and I owned a small press business. He managed the financial and technological aspects, while I handled the rest. Thankfully, he understood the urgency of the situation and agreed that I should prioritize caring for my mother. We both knew that managing the entire business alone would be overwhelming for him alongside his full-time job. It was a difficult choice, but I made the sacrifice of selling the business.
Working in the press industry had always been a dream come true for me. The job brought me immense joy, and it’s something that still evokes a deep sadness when I think about it. However, once I wiped away the tears, my determination shifted towards taking care of Mom. With a deep breath, I boarded a plane to New Mexico and settled into her spare room.
I anticipated that caring for her wouldn’t be easy, but the true extent of the challenges caught me off guard. I envisioned accompanying her to medical appointments, picking up prescriptions, cooking for the both of us, and offering unwavering support. Somehow, I had convinced myself that this was how it happened in the movies – a struggle, a caregiver assisting with daily tasks, and a triumphant victory over cancer. Unfortunately, real life proved far more destructive.
The subject of caregiving remains shrouded in silence within society. It’s intertwined with the taboo topic of death, something people are often reluctant to discuss openly. Caregiving is messy, both physically and emotionally. It takes a toll on relationships and personal well-being. Society expects caregivers to be strong, enduring silently without complaint.
Even as the doctors informed us that the chemotherapy wasn’t effective and that they could no longer offer assistance, Mom remained in denial. We argued when she insisted on going shopping with friends despite the risk of pneumonia. We clashed over her desire to drive her van, even as her reflexes slowed. At one point, she even threw her phone at me. Exhaustion consumed me as we constantly checked restaurants for empty seats, even though doctors advised her to avoid crowded places. She would order excessive amounts of food and drinks. I started telling the waitstaff to bring it all, even though it was wasteful and costly. All I wanted was to provide my mother with fleeting moments of happiness.
Hospice care was associated with the idea of dying, which Mom vehemently rejected. When the time finally arrived to call upon their services, I retreated to the backyard and wept. That was a decision I should have made sooner. Hospice not only cared for my mother, but they also supported me. During their presence, I could alleviate the guilt and take moments for self-care, such as bathing and getting a much-needed hour of sleep. I hadn’t anticipated just how essential those luxuries would become. In my pursuit of being strong for both of us, I unknowingly made things more difficult.
During an attempt to assist her into the bathtub, my mother slipped and fell. I desperately tried to catch her, but she hit her head on the bathroom counter, requiring stitches. This incident resulted in a trip to the emergency room. There were other occasions when she insisted on going to the hospital due to dizziness or nausea, often caused by dehydration. Despite the doctors’ warnings, I couldn’t bring myself to deny her requests. Painful discussions ensued with the ER staff, who tried to make me comprehend the increased risk of pneumonia and potential death. How can you explain that to someone who is already dying? One of her so-called “friends” convinced her that sleep medication would cause sleepwalking, so she continuously disposed of the pills. I had to deceive her about their purpose, just to ensure she would get a couple of hours of rest. I stopped taking my own sleep medication out of fear that she might need my assistance during the night. I even purchased baby monitors to keep an ear out for her. Sleep became a distant luxury.
One cold November night at 2 a.m., I went to check on her, only to find her nowhere in the house. Panic consumed me. After a thorough search, I ventured outside and eventually discovered her wandering in a vacant lot. She was barefoot, dressed only in her pajamas. She resisted when I tried to put socks on her. She yelled at me to leave. I stayed. Where was the promised connection and closeness we were meant to experience?
As challenging as it was for me, I recognize that it was even worse for her. During the Christmas season, she drooled into the cookie dough while attempting to make gifts for her friends. My brother discreetly disposed of the unfinished treats, and Mom never knew. In her final days, she regressed mentally and emotionally, resembling a young child with her thoughts and actions. My brother referred to it as “chemo brain.” Perhaps there was a sliver of blessing in this, as she could still find joy in the simplest of things. Close to Christmas, we embarked on a hayride, and she delightedly sang to the snowmen. It was utterly heart-wrenching.
On Christmas Eve, I contacted hospice, and a hospital bed was arranged in our living room. I contracted strep throat around that time and learned firsthand that the stress of caregiving can significantly weaken the immune system. This was years before the advent of COVID-19, yet I found myself donning an N95 mask to deliver soup and change my mother’s sheets. Due to heavy snowfall, the hospice workers were unable to reach us. Even though we were together, it felt incredibly lonely. Eventually, she lost the ability to speak or move. I sat by her side, watching her chest rise and fall, ensuring she was still with us.
During the week leading up to her passing, I slept in a recliner near her bed. I played all the movies she had once taken me to see and filled the room with her favorite music. At one point, I glanced over at her, trapped in immobility, and noticed a tear streaming down her cheek. In a hushed voice, I whispered, “It’s okay, Mom. Don’t cry.” Deep down, I knew I was lying to both her and myself. Nothing was okay. She had every right to shed tears.
On one January morning, my brother was present as she took her final breath. People often mention a phenomenon called the death rattle, and I can assure you that it is indeed real. Her body convulsed, gasping for air, and then ceased all movement. The hospice nurse had informed us that she would still be able to hear us for approximately five minutes after her passing, so we filled those moments with expressions of our deep love for her.
Nowadays, people commend me for being a dedicated caregiver to my mother. However, it wasn’t a position of greatness. Every conversation with my aunt entails her insisting that I was a blessing. I understand her sentiment, but I can’t help but believe that it was a curse to witness my mother’s decline without having the power to heal her. I couldn’t make anything better for anyone. The only choice I had was to determine which of the three individuals my mother had promised her antique divan to would be the one to take it home. As a token of her memory, I inherited her beloved dog, Tiffie.
As devastating as this experience was, I would willingly go through it all over again. It’s unbearable to imagine anyone enduring what my mother did without the support of a loved one. Nevertheless, I acknowledge the mistakes I made along the way, and I hope that my mother has found it in her heart to forgive me.
This experience has transformed me on countless levels. That first summer without her, I watered the garden alongside my tears, each drop blending with the hose water. Even now, I catch myself reaching for the phone to call her. On the anniversary of her passing, I commemorated her memory with a tattoo – a sunflower from whose petals birds take flight. It serves as a permanent reminder of her vibrant spirit.
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